suzefricker@mylifeaccordingtome.org Available all the time, just send me an email and I will get back to you.

Open letter to Children with Disabilities

Dear child,

I know you wish you were like all the other kids in school. You wish that you were not different. You wish that the comments would stop and that you would be accepted for who you are.

I know that when you get up in the morning wishing you could stay in bed and pray that you could stay safe. I know at times you feel so low that you want to die.

I know how you feel because I was you. I was picked on and bullied my entire school life, unfortunately for me it wasn’t until I was an adult and late late teens that I found out what made me different but it hurt. The comments that kids made, the names I got called and sometimes even physical violence. I just wanted it to end. I didn’t know how to bring the subject up with anyone because when I did things got worse. So, I internalised it all.

But, I want you to hang in there. No matter what makes you different you are special. No matter what you deal with on a day to day in school it can get better. It is hard to see the light right now but it is there and you can be who ever you want to be. You can get a college degree and you can have a career and those bullies you dealt with in school are likely to find out the hard way what Disability is. When they have to deal with it either in themselves or in the family they love they will realise and regret the choices they made. They will remember you forever because they will regret it and you will not remember them.

The light may seem far off but don’t loose hope. Don’t let the bullies win. Because everything you are going through now is giving you more strength to go out and get what you want.

Your family love you and you are loved by people who don’t even know you.

Find your strength and fight on through the pain and through the hurt because what is waiting on the other side is acceptance, love and understanding.

Bullies can only win if you let them. So fight hard every day to prove that you are the awesome person that you are.

Prayer, love and support going out to you and all children who have a Disability x you are all loved x

From

Me

Food & Autism

When you are autistic you can have some peculiar eating issues.

Some people can not let their food touch, other people have to eat their food in certain orders, and most have issues with textures of food. What I have found realizing my issues with food are linked with my autism I have noticed that people really do take for granted what they eat.

I learned from an early age I have an issue with meat. I can not stand the texture of most meat is most formats. Because of this, I had to dabble in vegetarianism. However, this is not a hard and fast rule. So, I can deal with corned beef when it is completely mashed up into a corned beef hash. I can handle mince if it is not fresh or too long, essentially it has to be small enough that when cooked it can just be swallowed if I have to chew it then it is not good. I can not handle roast anything. I hate the texture and I hate anything that is still in the form of the animal it was. I can’t eat it. It becomes a chewy mess in my mouth and my body will not let me swallow it.

But again, it is not just meat that I have an issue with. I can’t eat egg in any format I find the texture horrible and taste even worse. Essentially if you want me to eat an egg you need to drown it in BBQ Sauce and I mean DROWN it. Brown bread I hate the texture so I can’t eat it. Broccoli, cauliflower, (tree veggies) you will never find me eating them Quiche HELL NO and the list goes on. It is a problem of texture and taste for me. Mostly the texture of it but sometimes it is both.

So, when I see people make HUGE plates of food and then throw half of it out it breaks my heart. When you have problems with food, you really realize how much actually goes to waste in the world. I try not to waste so when I make a big pan of anything I will portion it up so I had risotto twice in a row this week because I was not about to throw half of it out.

It can get me down because I struggle with cooking and it is harder to find recipes that are for vegetarians which keeps out the food I cant handle. I would love to learn recipes that would work for me but I am not sure they exist. My dream would be to fly out to LA, spend one on one time with a top chef *cough* Anne Burrell*Cough* or others like Bobby Flay, Alton Brown, Tyler Florence, Robert Irvine or Beau MacMillan *Cough* Anne Burrell *Cough* I think his name is and give them a list of what I cant make, what I can’t eat and work out some simple dishes that would A give me better skills in the kitchen but also be healthy for me.

Cooking and food are a big passion for me but it is also my biggest pain. The world of Autism is not great. You do your best to bring the positives to the surface but the bad stuff like issues with food can always bring you down.

 

Public Vs Private

I was just in the shower thinking about this and felt that I had to share. Before I went into the shower I read yet another story about how terrible Meghan Markle is and how she is causing problems for the Royals. I just thought who cares. But also I thought why are people judging her so harshly?

We all seem to lead two lives. We lead one life in public and the other in private. One life gets seen on social media and the other one doesn’t. Don’t get me wrong if any of these stories are true then she and all the Royals from what I have read should be ashamed of themselves. The stories don’t paint any of them in a good light and that is not even factoring in the historical one which is Prince Charles and his mistress turned wife.

Then it got me thinking if we are living two lives (one in public and online and one in private) how can we as autistic people really navigate the world? It becomes harder and harder to guage what people actually want. Honestly sometimes I feel like screaming.

So let me tell you a story. Before I got diagnosed I entered the world of work. I knew I had to be a good employee. I knew my interpretation of what a good student had not faired me well but I was determined to be a good employee. But I had no idea about what that was. So from what I had guessed from my parents and TV I put a persona together that I thought was what a good employee was. It worked well, until it didn’t. I was so far from being who I was and it almost destroyed me when I thought about things like, why did I struggle with Christmas Meals? Why could I not last more than a year or two in employment? I felt defective. I felt like a failure. My public image seemed to be a failure.

Skip ahead to 2018 when I got my diagnosis and everything clicked. I had struggled with Christmas do’s because I did not feel comfortable with the people I worked with and struggled to interact with them. I struggled to build relationships with people because I could not understand their intentions. Suddenly I felt less of a failure and more inspired.

From the date of my diagnosis I made a vow. I would drop that persona that had failed me in the past and I would just be me. I would learn about what made me me and live as openly and honestly as I could. When I wsa getting over stimulated I would make it known so I could take the breaks I needed. I now educate my team on what works for me and what doesn’t. Even today, a colleague kept saying give me a second, give me a minute, I will call you in 5 minutes. So, I said to him it is best not to say that to me because I was timing those time periods and then shut my skype off after because you didn’t call. He honestly hadn’t realised it was something that might get to me..

I am not saying to be someone or something your not in public. What I am saying is bring as much of your private self into your public self or vice versa (depending on which side is the nice side of you) This way, you will be happy with what you put out there and less people will critise you.

Helpful tip for autistic people on social stupidity (my name for it as I hate saying socially awkward) Find someone who is not on the spectrum that you trust. When you have something that you do not understand you have a trusted person you know to steer you in the right direction. It is so important that you have someone like this you can speak to so that you don’t make bad choices this especially goes for dealing with the opposite sex. I have about two of three people I can go to that I can speak with and know they will give me impartial advice on what is a good course of action if I do not know what I should do.

Honestly without my goto neuro-typical people I may of made a bad mistake today :S

sory for the ramble I needed to get this out before I went to sleep.

We have a THING!

I have often wondered about the different communities we find ourselves in and wonder how we all survive. What I have realised is we all have a thing.

Now for the purposes of this conversation I call communities based around gender, sexual orientation, religion, disability, ethnic background. Each of these communities exist for each characteristic. I do not mean community as in where you live.

For a long time I used to think that the disability community did not have a thing. The thing is the one thing that you can say but people who do not belong to your community can’t because they don’t understand it.

I started buddying up with a disabled colleague who was having a hard time at work. We try and catch up once a week to see how the other is doing and make sure that the world has not exploded. Today she was telling me about an awful screw up her doctors had made with her medication. I couldn’t help but laugh because I had been in a similar situation with a dodgy GP previously.

As I usually do because of being autistic I said “sorry I should not of laughed”. Mainly because I was not sure whether it was acceptable. I get nervous, even with friends, whether I am doing or saying the wrong thing. Now that I know I deal with Autism, I know understand why I struggle but doesn’t make it easier now that I do not have a support worker guiding me through these things.

Anyway she turned round and said, “If someone without disabilities had laughed I would have told them off, but I bet you know where I am coming from”. I explained that I did and told her what had happened to me and we giggled for about 10 minutes about the whole thing.

It did get me thinking however, this is something that the disabled community has as our thing. We can laugh at, or make jokes about our conditions whether its something like dyslexia or fibromyalgia. We can laugh at it but those who do not have it, they cant because they don’t know what it is like to deal with these condition.

However, I ask, has it become too taboo that we can’t make fun of ourselves to make us laugh?

I deal with mental health issues, when I have a bad day or when I see someone is uncomfortable about talking to me about it I make a joke about it. I tend to do this a lot. I get called crazy a lot (mostly from when I am having over stimulated moments I tend to go a bit Cray Cray) but to make someone feel at ease I say “I am not crazy, I am depressed. I don’t take anti-crazy pills I take anti-depressants.” This tends to get the conversation started. I even know the official medical diagnosis of depression so I can give as many facts as I can to people.

However, for every person who becomes comfortable talking about mental health from talking to me in the way I do, you have at least 1 out of every 10 conversations where I am told “You should not laugh at your mental health, it is serious”. I tend to think that these people either have not had to deal with mental health or if they do then they subscribe to the “mental health is a shameful topic” theory.

Has the world become so PC that we can’t talk about things that affect us how we want?

If anyone struggles with disability either theirs of a friend and needs some tips on how to broach the subject please email me at suzefricker@hotmail.com The email at the top of the page does not work so use the one here.

I am not a campaigner

I am not a campaigner!

I know this statement sounds strange but the truth is I am not. I do not believe the world owes me something because I am autistic, dyslexic, with depression and spinal problems. I know the world does not work in a way where those in need get what they need. However, some people think that because I blog that I am a campaigner.

The truth behind what I do however, is not so much campaigning but more PR.

The disabled community has two things against them.

The first thing is that when someone with disabilities wants to work it is hard to find someone who will hire them. Obviously work places can not discriminate on disability grounds but we all know that if two candidates with the same qualifications and experience go for a job, it is more likely that the one without disabilities will get the job.

Then if someone with a disability gets a job they lose the support that they need to survive from the government. There are benefits that I could be on with advice given to me that if I stopped working I could get them. But unless I am willing to give up work I am not allowed them. How fair is this? Your telling someone who wants to work who would be entitled to the benefit that they have to loose the purpose in their life to get the help they need.

The other thing we have against us is our own community. There are people out there juts like in all communities who will say “fuck it I am disabled I don’t have to ever work again”. Because of this attitude when they are made to work they leave such a bad taste in their employers mouths that the next person who has that disability will get “oh no not another one”.

So what can we do?

I choose to role model myself in to how I would like people to view me both personally and professionally. I tell my team what sets me off, what of me can be changed and what can’t and I have open and honest dialogue with people.

I tell everyone that if I do something to upset you then I need them to explain it to me not just say “oh she is autistic” or “she has depression”. This works for no one.

I am as open and honest as I know how to be so that when the next person has my job, if they have depression, autism, physical disabilities, dyslexia the word my team say is not going to be “oh not another one” but in fact “Yes we have another one”.

Only we can change how people view us. Only we can show them that we are as good as those without disability. We don’t need campaigners, we need people willing to go out and show the world, disability does not mean we are useless.

So my challenge to all those with disabilities. Go out, find a way to show the world the amazing things that you can do. Show the world your amazing gifts that your disability gives you. We all have something. Don’t hide it but show the world the amazingness that is you.

Doing Good

Doing Good Does Not Have to be Difficult

Today I managed to do something that made me feel good. I had a £10 voucher left from a Christmas bonus I got this year.

Whilst I was shopping for some food, because I have been held up in my flat due to illness I met someone who I noticed that the person would not be classed as a “typical” person. I noticed that they seemed to have issues with inappropriate conversation. Instead of shooing her away I continued to talk to her and finished my shopping with her.

After I finished shopping I was able to talk to her some more and she told me she was having a hard time. I went into my purse and pulled out the voucher and asked her if she shopped at Iceland. She said that she did so I gave it to her. I don’t really use Iceland very much so the voucher was sitting in my purse grabbing dust.

I am only telling you this because doing good does not have to be something that you have to kill yourself over. I did good today by showing kindness to a stranger who I identified with. All it cost me was a voucher i was not going to use.

When you do something nice for people then you will get good vibes back in your direction. When you do good it feels goods and you are sharing goodness with the world. In a world of uncertainty, pain and suffering we should all do our part to bring a little joy into the world.

Through the support I got when I had a support worker and people I work with I have managed to learn certain things which are inappropriate to talk about to a stranger and this is how I notice it sometimes in others.

So do what you can to make your life good and bring what joy you can in to the world and we will be the light in the troubled times.

THIS IS ME

I re-watched The Greatest Showman again tonight and again, like most people around the world I found an affinity with the movie and the songs. So, tonight I want to share my promise to myself I made after watching this inspirational movie again.

Every time I have had a new diagnosis I have always felt like I was defective. Why do I have depression? Why am I dyslexic? Why did my spine have to get crooked? But the opposit is true for my autism diagnosis. Before diagnosis I felt like I was defective. I did not understand why I was so different to everyone else especially when it came to reacting to things, or the trouble I got myself in during my WILD CHILD days.

I could not understand who I was but when I was diagnosed things came into perspective for me. It was like a weight was lifted off of my shoulders and I could say to the world THIS IS ME. However this has not been without trials and tribulations in itself.

I have faced hatred and ignorance because I come from a generation where girls were not autistic and this has come through from social media and people I have known for years and years (pre diagnosis). Because of the diagnosis I felt freedom and through these mean and horrid people I felt that I was being forced back into a box that stifled me for years.

When I watched the Greatest Showman and the song This is Me came on i honestly felt like I was going to cry especially with these lyrics;

But I won’t let them break me down to dust
I know that there’s a place for us
For we are glorious

When the sharpest words wanna cut me down
I’m gonna send a flood, gonna drown them out
I am brave, I am bruised
I am who I’m meant to be, this is me
Look out ’cause here I come
And I’m marching on to the beat I drum
I’m not scared to be seen
I make no apologies, this is me

So the promise I am making to myself is simply this. When those people who hate on me or show their ignorance because they think they know who I am and what I really feel like and go through each day try and put me back in that box. I will not let them. THIS IS ME

I am an Autistic,Dyslexic, who also has Depression and Spinal Problems.I risk meltdowns in public places when they are busy. I get over stimulated and go a bit Cray Cray until I do something to calm me. I have days when I don’t want to get out of bed, or days when I physically cant without crying. My spelling always needs to be spell checked and I take things very literally at times. But ladies and gents guess what? THIS IS ME and if you don’t like it you know where the door is!

I urge everyone who is different to read this and take it on board. You are you, if you hide that from the world you are depriving people of an amazing gift of you. March to your own drum and do not apologize for it. You are who you are and anyone who wants to stifle that does not deserve your company.